HealingWell
Search Close Search
☰

research fatigue, fear, or both?

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/8/2015 11:04 PM (GMT 0)
Moderate BPH. This (in my mind) rules out any form of radiation. Surgery should kill 2 birds with one stone. My attitude is that anything that's causing this much trouble just needs to come outta my body.

I've been to Baltimore, MD twice for consults. I've talked to 2 surgeons here. (And two radiation oncologists). (Ive lost count of the number of scans l've had) Talked to many people and on the Internet everyday. And now?...Just found out about Tewari in Manhattan. This would be a 3 to 4 thousand dollar trip. Plus...more tests before treatment. Plus it alone. Plus Mid town Manhattan.... (Could it be in a less convenient place?).

After all of this I still don't even know if it's "prostate contained" yet. From what I'm told...a 3t mp mri is necessary for this. But..of course...There not one in Knoxville. Then?.. ("Well...it really needs to be read by an "expert in prostates"). They do them in Chattanooga, but, of course, not knowing if the radiologists who reads them is as good as Manhattan....

My gosh..This is ridiculous!

What I do know...

I gave blood last week for my first post DX PSA check. I am to meet with my uro Tues for the results. I guess I'll run all this by him. Get his take. Even scheduled for surgery in Baltimore for robotic surgery April 14th and I'm still running around...possibly even to Manhattan on March 19th for a consult with him.

Winded.
Posted 3/8/2015 11:19 PM (GMT 0)
My sister says "You just don't wanna have surgery David". (And she's right).

I don't have a "gut" feel yet...lol...and may never have!

I'm so tired of this crap...it's depressing...(on top of another "once in a lifetime "stressor" or 2 in other areas of my life)

When I called JH to schedule my surgery for April 14...depression was physically palpable.

The only thing I know about that surgeon in Baltimore is that he's employed by JH and has done statistical research. (The "Han's tables were "his work". But a good statistician does not necessarily a good surgeon make. And it's a hassle going 500 miles for this)
Posted 3/8/2015 11:39 PM (GMT 0)
Island,
I'm thinking its apparent that you don't have confidence in your surgeon. Not that you think he's not a good surgeon, but that you just don't have a way to know, so you are thinking should you see Tewari. Tewari is great, IMO. But if you are concerned about cost, I'm guessing there has to be someone as good as Tewari, closer to, and more convenient to, your location. Maybe or maybe not, not in Tennesee, but certainly closer than NY. Maybe someone here can chime in. Or maybe someone here can chime in on the competence of your surgeon.
I do think though, that you have to have confidence in your surgeon to successfully get through this.

As for the bigger picture....
You've already indicated that even though you r a candidate for AS, you are not wired for it, it will be too hard for you. Maybe reconsider that, but you know yourself better than anyone. Is it possible that if you were in a formal, highly structured AS program, that you could mentally handle it better?

As far as non AS treatments, if you are afraid of the surgery, or reluctant for another reason, you can obviously consider Brachy, which will be just as effective. Just realize, as evidenced from others comments here. There is no treatment, outside AS that is a walk in the park.

Just trying to help you sort through the mess. I realize it's not easy.
Posted 3/8/2015 11:44 PM (GMT 0)
Did a RO rule out radiation? You'd be surprised what a good RO might be able to do.

At your PSA I'd be very surprised to find any is outside the prostate bed (not unheard of but very unlikely). Surgery is a good option.

The problem is that just about all the choices are good with variations for possible SE effects. At some point you just have to stop second guessing, pick a course and go for it.

Andrew
Posted 3/8/2015 11:46 PM (GMT 0)
Island Time: Dr. Smith at Vanderbilt (Nashville) is one of the very best out there. One of the pioneers of RALP, and has done thousands. Plus, there's great music to enjoy the night before surgery.
Posted 3/9/2015 12:06 AM (GMT 0)
Island,

Six years ago, I had a large Prostate and went with surgery because the RO and Uro said they would try and shrink the Prostate down to a size that was reasonable for brachy. I did not buy into the try.

Today, I am not do sure I wouldn't try to shrink the bugger and go with brachy.

Having said that, the surgery corrected all of my urinary problems. I can now go like I was twenty. Big difference, and one that has improved my QOL.
Posted 3/9/2015 12:09 AM (GMT 0)
The radiologist at JH said I am a candidate for radiation. But...that's 2 months of living 500 miles from home. And...I'm already on Flowmax. He knows this but said he still doesn't believe it makes a difference. So I can still do that but....buts are driving me crazy. I've read where radiation can cause flow problems which I've already got. But I hear ya in the shop...what I hear ya saying is that it may be outta the organ. And THAT'S my fear. Ending up needing both treatments.

Spot on prato. It's not that I don't know Han is not...it's that I don't know that he is.

Dr. Smith. One of the few I've not talked with. I just read of one person's opinion of Vanderbilt's Urology dept and it was less than Favorable.
Posted 3/9/2015 12:11 AM (GMT 0)
RCS...

THAT'S why I didn't want to go with Song at JH for radiation. His first thought? Hormones....

I didn't like the sound of it.

Why do you say..."Today I'm not so sure I wouldn't try to shrink the bugger and brachy? " What makes you say that?

Also...a neighbor of mine had brachy 10 years ago. 4 years ago they cut out his rectum because of it. Now he wears a bag.

Post Edited (island time) : 3/8/2015 6:18:59 PM (GMT-6)

Posted 3/9/2015 12:31 AM (GMT 0)
My urologist at MD Anderson said physician skill/experience with brachy was just as critical as finding a Doc with 1,000 or more da Vinci prostatectomy surgeries.
Posted 3/9/2015 12:39 AM (GMT 0)

John_TX said...
My urologist at MD Anderson said physician skill/experience with brachy was just as critical as finding a Doc with 1,000 or more da Vinci prostatectomy surgeries.

That's my take on my neighbor. He had his done where I wouldn't take my dog.
Posted 3/9/2015 4:01 AM (GMT 0)
Han at JH has a great reputation. He's done thousands and has a very low positive margin rate.

SBRT is done in 5 sessions rather than 40.
Posted 3/9/2015 10:43 AM (GMT 0)
island time - for what it's worth, I had very good experiences with Vanderbilt's urology department. They interact with other doctors there, with test results available through their "myhealthatvanderbilt" website.

One's experience can vary depending upon how the communication works with a specific doctor. Every person has preferred styles, and sometimes it's not a good match.

Just one person's positive counterpoint...

Jerry
Posted 3/9/2015 11:02 AM (GMT 0)
This thread just reiterates two things I believe to be true. The best indicator of a good outcome, regardless of treatment mode, is the experience of the lead physician. Couple that with the level of confidence and comfort the patient has with both the chosen treatment and the physician. We have to both be OK with the mode of treatment AND the actual team we're dealing with (many of whom we have no idea going in who they are).
Posted 3/9/2015 12:13 PM (GMT 0)
Island,

To answer your question, I said I would now consider shrinking the Prostate with hormones and then doing brachy because I feel technology has advanced a lot in the last six years. Also, there is the six years of practice time for the doctors I was dealing with .... similar to DaVinci docs obtaining sufficient experience. Heck, I would even consider Cyberknife now .... Six years ago we did not have one of their machines in town.

Again having said this I would stress the benefit I did not foresee when I chose surgery. That benefit is the vast improvement in urinary function and my QOL. (Maybe shrinking the Prostate before zapping it would give the same relief?). Of course, if surgery led to leaking problems the QOL benefit would not be there.

A lot of pros and cons for you to sort through. You'll probably have to make compromises, but when you finally chose how you want to be treated, I'd recommend that you select the best docs you can. If possible, make treatment your highest priority (as in placing it in front of job, etc,)..... you only get one chance for your initial treatment.

Best wishes and good luck as you move forward.
Posted 3/9/2015 10:34 PM (GMT 0)
Based on your stats (low psa, low PCA yield), a 3T-MRI probably would not find anything. You can see my stats, and my 3T-MRI with and without contrast (over 2900 images) found only one slightly suspicious location which was targeted during my biopsy proved to be negative.
✚ New Topic ✚ Reply